Chronic lymphocytic leukemia (CLL) is a type of cancer that affects the blood and bone marrow. Bone marrow is a soft, spongy substance within bones that produces blood cells.

CLL is the result of various genetic mutations in the DNA of cells that produce blood. The exact cause of these mutations is unknown.

These DNA changes occur over the course of a lifetime, rather than like other genetic changes that are passed down before birth.

If you’re diagnosed with CLL, your bone marrow produces too many lymphocytes, which are a type of white blood cell. These lymphocytes don’t function properly. They cause further problems by getting in the way of other blood cells being produced.

Symptoms of CLL can vary depending on the stage or extent of the disease. You may not experience symptoms early on. As the disease progresses, symptoms can include:

  • enlarged lymph nodes
  • tiredness
  • fever
  • night sweats
  • loss of appetite
  • weight loss
  • frequent infections
  • abdominal fullness
  • shortness of breath

Make an appointment with your doctor if you develop any of these symptoms. The sooner you receive a diagnosis, the better your outlook is.

CLL has a higher survival rate than many other types of cancer. The 5-year survival rate for adults with CLL ages 20 and older is around 87 percent. This means that 87 percent of people with the condition are alive 5 years after diagnosis.

However, survival rates vary depending on the stage of the disease. As researchers continue to learn more about CLL, it becomes more clear how difficult it can be to predict outcomes.

There are many factors to take into account for treatment and survival.

Outcomes of individuals with CLL are complicated by the absence or presence of a variety of cell markers, such as IGHV, CD38, and ZAP70, as well as specific gene changes.

According to the National Cancer Institute, in 2022, there will be an estimated 20,160 new cases of CLL in the United States. The disease will cause an estimated 4,410 deaths in 2022.

Some people have a higher risk of developing CLL. The disease is slightly more common in men than women. The average age of diagnosis is 70 years old.

In fact, nearly 80 percent of those newly diagnosed with CLL are over age 60. Those with Russian or European descent are also more likely to develop this type of cancer than others.

Along with race and gender, family history of CLL or other blood disorders also increases your risk. Exposure to certain chemicals like herbicides and insecticides seems to increase risk as well.

Overall, chronic lymphocytic leukemia has a high survival rate compared to other types of cancer, but several factors influence your individual outlook. That includes:

  • the stage of the disease
  • how well you respond to treatment
  • certain cellular and genetic markers

After a diagnosis, the next step is staging the disease. There are currently two staging systems in place for CLL: Rai and Binet.

Rai is more common in the United States, while Binet is more commonly used in Europe.

Rai staging defines 5 stages from 0 to 4:

  • stage 0 is considered low risk
  • stages 1–2 are considered intermediate risk
  • stages 3–4 are considered high risk

Risk defines how quickly the disease is likely to progress. The higher the risk, the more quickly CLL is expected to advance.

The Binet system utilizes three classifications with an A, B, and C staging system.

Regardless of which system is used, staging is determined based on a variety of factors such as blood counts as well as any involvement of the lymph nodes, liver, and spleen.

Open lines of communication between you and your cancer specialist, or oncologist, are essential. They’re an excellent resource for up-to-date information regarding your treatment and care.

Since this disease is complex, they can also provide guidance based on your individual case of CLL.

Treatment may not be necessary right away if results from your bone marrow biopsy, imaging tests, and blood tests reveal an early stage with low risk. Age, disease risk, and symptoms all play a role in determining treatment options.

According to the Leukemia & Lymphoma Society, there’s no proof that aggressive treatment of early stage CLL extends life expectancy. Many doctors forgo treatment at the early stage so you don’t experience side effects and possible complications.

Instead, doctors will regularly monitor the disease, and only recommend treatment when it progresses.

If you’re diagnosed with a more advanced stage of CLL with higher risk, different treatments can improve your survival rate.

Treatments usually include a combination of chemotherapy drugs to kill cancer cells. You may also be a candidate for a bone marrow stem cell transplant.

In this procedure, you’ll receive healthy adult blood stem cells from a donor. This can stimulate the production of your own healthy blood cells.

In younger people who haven’t previously been treated, who are in overall good health, and who have certain favorable cellular markers, the combination chemotherapy called FCR (fludarabine, cyclophosphamide, rituximab) has shown great promise.

According to the journal Blood, this treatment combination can induce long-term survival and possibly a cure for certain individuals.

However, this treatment approach isn’t for everyone. Those over 65 years old, individuals with poor kidney function, as well as those with other health conditions may not tolerate this treatment.

In some people, this approach can also increase the risk of infection and other cancers.

Living with CLL can bring on a variety of emotions. Some days you may feel good. Other days, not so good. At times you may feel overwhelmed, angry, afraid, nervous, or hopeful.

Even if you’re in the low risk stage of CLL and not receiving treatment, you may fear the progression of the disease.

These tips can help you cope.

Express your feelings

You may wish to keep thoughts to yourself to avoid upsetting family or friends. But opening up about how you feel is key to coping with the cancer.

Talk with a trusted family member or friend for reassurance and support, and allow yourself to grieve. It’s okay to cry. In most cases, you’ll feel better after an emotional release.

If you’re uncomfortable talking with others about your condition, write down your feelings in a journal.

You may also consider joining a cancer support group to connect with others who understand what you’re going through. Or ask your doctor for a referral to a counselor who works with people diagnosed with cancer.

Educate yourself

A cancer diagnosis can invoke stress and anxiety. But the more you know and understand about the condition, the easier it’ll be to accept your new reality.

Be your own advocate — don’t wait for your doctor to educate you on CLL.

Research the condition and stay up-to-date on the latest treatments in order to ask thoughtful questions at each checkup. Take notes during your appointments and ask your doctor to clarify any information you don’t understand.

It’s also important to find reliable information when looking online. Check out reputable sources such as:

Ask your doctor for recommendations on where else you can learn more about your condition.

Stay active

Physical activity is another way to cope with a CLL diagnosis.

Exercise increases your brain’s production of endorphins. These are the “feel-good” hormones. As a result, exercise helps improve your mental outlook.

Staying active can also boost your immune system and help you fight disease. It can even help reduce fatigue and other cancer symptoms.

There’s no one activity that’s best for people living with CLL. Experiment with activities to find which ones you like most. Go for a walk or a bike ride, or take a yoga class or another exercise class.

Just remember to listen to your body so you don’t overdo it.

Take your mind off your disease

It can be difficult to get your mind off cancer. One way to cope is to find enjoyable activities that can help you unwind and relax.

Explore a hobby, such as photography, art, dance, or crafts. For relaxation, consider guided imagery meditation. This technique allows you to focus on positive images to help you relax and reduce stress.

And when you’re having a good day, use your energy to live life to the fullest, which can help take your mind off your health.

CLL is a type of cancer that affects the blood and bone marrow. General survival rates are higher for CLL than other types of cancer. But your individual survival rate can vary based on a variety of factors.

There’s no cure for CLL, but for some people, certain treatments can have a positive impact on survival rate. Work with your doctor to determine your individual outlook and proper next steps.